Friday, April 13, 2007

Autism Vox Falsus

There is in the world autism community, at least on the internet component of that community, a group which portrays itself as the true voice of autism. It is essentially an internet based community comprised of some high functioning autistic persons, some parents of autistic children, and some "professionals" including some psychiatrists and educators who oppose attempts to treat or cure autism. Self described as the Neurodiversity movement this group poses as human rights advocates for the autistic but often resembles a hate group in its personal attacks and demonization of any parent or group which attempts to find and fund treatments and cures for autism. Any mention of the serious challenges of the more severe forms of autism is attacked by the high fucntioning autism internet essayists. Even mentioning that some autistic suffer from cognitive deficits, even the use of the expression "low functioning autism" is met by hostility from the Neurodiversity advocates. Far from being the true voice of autism, Neurodiversity is a false voice; an autism vox falsus.

Parents across Canada and the United States and elsewhere in the world have fought hard to seek and obtain a better life for their autistic children through treatment and education. For their efforts they are mocked, ridiculed and demonized by the Neurodiversity movement . The core of the Neurodiversity movement is a number of high functioning autistic persons who do not wish to be cured of their autism. They view their autism as an essential component of who they are as individuals. That is a view point that I can and do respect. They have the right to wish to remain autistic. Where Neurodiversity becomes troublesome is when they fight to prevent parents from seeking cures and treatments for their own children and the demeaning tactics they use in doing so.

One of the Neurodiversity internet commentators who is generally more polite than most is Ms. Kristina Chew the mother of a 10 year old autistic boy, who holds a Ph.D and is a classics teacher. Although Ms Chew has in fact employed ABA interventions to assist her son she downplays that fact on her blog site “Autism Vox” where her guest commentators usually present a Neurodiversity anti-autism cure perspective. But, she is admittedly almost always exceptionally polite and diplomatic. That diplomatic bent changed dramatically this past week though with two comments from Ms. Chew about the Don Imus racism controversy. In these comments Ms. Chew made clear her animosity towards Autism Speaks and towards the parents in the Autism Every Day video.

"I really don’t have anything to say about Don Imus — I am no fan, to be sure — but living here in New Jersey, and my husband being a Rutgers alum — I have been appalled, or just outraged, at his use of “crude, offensive language” about the Rutgers women’s baskbetball (sic) team last Wednesday while discussing their defeat in the NCAA Women’s Basketball Championship.

I do not know understand how any national autism organization can be associated with someone who can use such hateful words."

http://www.autismvox.com/one-thing-don-imus-shouldnt-have-said/

“It should be noted that, just under a year ago, Imus’ MSNBC show broadcast A New Decade for Autism, a fundraising event at which the video Autism Every Day was first screened—a video which depicts life with autism as difficult (as it can be, but there are ways to change this, for sure) and hopeless; a video that was felt by more than a few autistic persons and parents of autistic children as portraying autism as horrrible and hateful only: No surprise, perhaps, that it had the endorsement of Imus.”

http://www.autismvox.com/in-the-wake-of-imus-ouster/

The heinous crimes committed by Autism Speaks? Raising money for research and treatment of autistic children. The Autism Every Day video consisted of parents telling of the challenges presented by their childrens’ autism. For that these parents, along with MSNBC and Autism Speaks , have been vilified by the Neurodiversity movement. Until this week Ms Chew and Autism Vox had been polite and diplomatic in expressing her Neurodiversity anti-autism cure sentiments. The language above though removes the pretence of civility from Autism Vox.

The use by Ms Chew of Mr Imus’ offensive personal comments to smear an organization and group of parents fighting to improve the lives of their autistic children is itself offensive. Autism Vox? Autism Vox Falsus is more like it.

10 comments:

I think we may find that wherever we are on the spectrum, child, adult or parent, we all basically want the same thing, the best possible future. The only way that I can envisage achieving this, is by presenting a united front.Best wishes

You offer sound advice mcewen.Unfortunately unity is difficult when the goals are divergent. Parents seeking cures and treatments for their own children are maligned by other parents who do not seek cures for their own children.

Why the anti-cure parents feel they have the right to do so is beyond me. I do not presume to tell these other parents they should or should not seek to cure their childrens' autism. They should not seek to tell me, or to malign me, or others who seek cures and treatments for our children. But if they do they should at least do it fairly and not use someone's personal remarks to smear efforts of others who have no involvement with those remarks.

I do not think Ms. Chew downplays ABA at all. She makes it very clear that ABA is an intervention that has proven to be a very successful means of educating her son. As a matter of fact she mentions how ABA has helped and continues to help her son on a fairly regular basis on her blog.

With regards to Don Imus, if you can still respect this man after what he said and defend him than you are the one with a problem. Additionally, Autism Speaks has done nothing to promote how vital it is to actually educate autistic children. Yes, there's a novel idea for them. All they seem to be about is posing with famous people and going on TV pushing what seems to be the "Katie and Suzanne Wright Show." There are so many more people who should be out there educating people regarding autism that have so much more knowledge and intelligence than these two. Why doesn't Autsim Speaks tell parents of effective educational interventions that can help our children now? Instead they just keep raising money for research. How about raising money for more ABA centers and high quality BCBA's that can educate children rather than just going on Oprah Winfrey or Larry King and whining.

Every time you go for a flu shot or send your kids for a series of vaccinations, you open yourself and your loved ones to potential health dangers, warns a top neurosurgeon in his new report. autism is a risk for those who take mercury based vaccines.

Perhaps you can also share your latin expertise with the editorial staff of the Washington Post.

"washingtonpost.com

Vox Falsus

Saturday, August 20, 2005; A16

The Aug. 16 news article about Supreme Court nominee John G. Roberts Jr. quoted him as saying, "I recognize that I am something of a vox clamans in terris in this area."

The correct Latin phrase is "vox clamantis in deserto." (That p hrase garners zero Google hits aside from those related to Mr. Roberts; " vox clamantis in de serto" gets more than 16,600.)

This phrase also appears five times in the Bible, including in all four gospels, referring to Isaiah 40:3, where the King James Version translates it as, "The voice of him that crieth in the wilderness," and "Prepare ye the way of th e Lord, make straight in the desert a highway for our God."

The Latin phrase, by the way, is well known to thousands of graduates of Dartmouth College as the school motto, but it appears to have fallen into disuse at Harvard in the 1970s.

I have to agree with Anonymous, it does seem as if it is the "Katie and Suzanne Wright" show....Autism Speaks doesn't speak for me...I think a cure is not in our imminent future and that work should continue towards that, BUT IN THE MEANTIME, we desperately need effective treatments, whether they be educational or medical in nature, to be AVAILABLE TO ALL CHILDREN, and they simply are not. Services vary greatly from state to state and also from county to county in some states, which is the case where I live.

At the risk of offending, I have to say also, that some of what people from Autism Speaks are saying is bordering on, if not downright in the vicinity, of a pity party for the parents.

I DO KNOW, how tough, frustrating, difficult, and heartbreaking it can be to raise a child w/ autism, but pity is not going to help the parents or the children. I have a 7 year old boy who is autistic and I would want a cure for him, but since one is not in sight, what do I do? Keep him at home until it is discovered and then start educating him? There is work to be done with these children UNTIL the cause/cure is found. We also need to focus on that.

I do not want my child portrayed as some kind of monster....any child can become unruly and present a behaviour problem if not parented correctly.....I am not saying that it is the parents fault, either.....they may not have had the resources they needed when the child was young...and that is one of the problems we face in many communities...it's not the parents, it is the lack of professionals who can and will diagnose early, and the lack of early intervention and experts in the field of autism.

I participate in many of the discussion on Autism Vox, and I always learn something and I am not always in agreement with everything that is said, Ms. Chew has always been polite and respectful and has put up with far more insulting comments directed at others who participate than the ones she directed at Autism Speaks and Don Imus.

The problem, as I see it, is that everyone in the autism community spends so much time and effort maligning the "other side" that we can present no united front in terms of ANYTHING. Autism is an epidemic, and yet you hear far more about breast cancer and just about anything else. Why? Because instead of arguing amongst themselves, they've united and get a ton of fundraising done.

When it gets to the point where folks are arguing over the puzzle ribbon, the one symbol that is probably most recognizable to those NOT part of the autism community and the one thing that might "click" with those who think "Pink ribbon, breast cancer. Yellow ribbon, troop support. Puzzle ribbon? Oh yes, autism." you know there is a serious problem.

I agree wholeheartedly.I have read Ms. Chew's Autism Vox and My Son Has Autism posts for awhile now and I'm uncomfortable with the unrealistic way she presents day-to-day life with an autistic child.I used to teach autistic teenagers and it was ROUGH!There was violence, head-banging, inappropriate sexual behavior (tearing off clothes and running into the street and mastrubating in public) inability to be toilet-trained and on and on. Ms. Chew says her child is on the lower-functioning end of the scale and yet she hardly ever mentions and of the extremely trying behaviors that typically low-functioning autistic children exhibit.She'll mention her child hitting her or having a meltdown but then she'll pull away and gloss over the incident. This isn't realistic and it offers no help to parents who are desperate to find something that works for controlling their autistic child's behavior.My kids are NT (thank God!) but I know how adolescents with low-functioning autism behave and every day is a struggle with themMs. Chew's description of life with her child doesn't paint an accurate picture. But that seems common among the neurodiversity community. Your child bites people and screams? He's just expressing himself in his own unique way! He should be allowed to be himself and if people don't like it then they're prejudiced against the "differently abled."BYW, I love the New Speak that the neurodiversity gang and the politically correct crowd have brought to the table. It's so Orwellian.The Imus incident was sneaky and wrong. I'm sure she had a problem with his very thoughtless and hurtful remarks, as many people did, but her attack on Imus seemed suspicious when considered along with her opposition to his views on autism.

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The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.